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Nonprofit Overview

Mission: Educate the world about the disease Syringomyelia and Chiari Malformation. Our focus is to provide updated education to medical professionals of all specialties to improve direct medical care for individuals living with these diseases.

Results: We were instrumental in the passage of over 25 proclamations from the 50 states declaring Syringomyelia as a disease and recognizing it in the month of May for awareness. We provide 24 hour ongoing support to our members through our three Facebook member groups...one for members, another for families, and one for parents of children with Syringomyelia. We developed the first advocacy toolkit for Syringomyelia for members to use when they go to appointments. We are piloting a Model of Care for Syringomyelia and will be working on developing this further to decrease morbidity/mortality and save lives! We just launched the first Chiari Model of Care for advocacy at doctor's appointments. We are working on launching the first worldwide natural history study and registry for Syringomyelia and Chiari as well. We are a patient-centered organization and we are strong advocates! We are Guidestar Gold members and we are Amazon Smile participants!

Target demographics: Men, women, children and canines of all breeds bravely battling the disease Syringomyelia; and Chiari Malformation all over the world!

Direct beneficiaries per year: Thousands of men, women, and children with a diagnosis of Syringomyelia and Chiari by establishing educational nurse led initiatives to provide updated education about Syringomyelia and Chiari to medical professionals of all specialties, new educational materials to members by social media, and provided a voice for members by establishing a sharing platform for them to share their journey with the diseases to increase public awareness . We established a social media teaching video about Syringomyelia and Chiari as well as developed the first model of care for Syringomyelia to share as an advocacy tool at medical appointments to aid in understanding of the disease. We are increasing understanding about canine Syringomyelia and Chiari through social media and sharing of stories.

Community Stories

15 Stories from Volunteers, Donors & Supporters

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This organization has given me hope. I have learned so much just from reading the articles, and talking with people in the Facebook group. Beth Nguyen is fantastic! She is always helpful even when she is feeling badly. I am thankful to have found this organization. Thank you for all you do!

The most amazing and proactive advocacy and support group I've ever been involved with in my life. I've got Syringomyelia, Tethered Cord Syndrome, Disc Degenerative Disease and a life time of rare neurological diseases and disorders all related to Syringomyelia. This group truly is the very best in education , support and ways to advocate for those of us with this highly rare disease. What a True Blessing!!!

The inception of this website was at an enormous personal cost to a woman I have never met, but feel she has saved my life, and those of others, with her efforts in establishing this website and all the others: thank you Beth Nyugen! She has picked up the phone more than once and called me out of the clear blue. . . not much of a "cyberspace" person, but this site, the information, the dedication and true listening/caring ability is like no other site I've ever heard of for anything. Beth is a true blessing with all her efforts, this website being only one. It is awesome and has taken the "hopelessness" out of my life.

Beth has helped me time after time. She provides great information that has helped me and my doctors educational information. She helped with getting Syringomyelia month in the state of NH. She is also a wonderful friend and teaches me new things all the time. Thank you Beth and staff

I had a great deal of questions about my disease (syringomyelia). Through this nonprofit group I have recieved emotional support, a model of care, and a wealth of information. The group founder is battling syringomyelia herself, so she knows and fully understands the affect SM can have on a persons life. She has taken her time to personally speak with me regarding questions and concerns I had in preparation for an upcoming doctors visit.

This organization has done the legwork and put together very useful information packets that I have taken to my doctors. The packets help educate health professionals about my rare disease so that they are better able to understand and help me. Beth has worked tirelessly to help others who have this rare disorder, in spite of suffering from its debilitating effects herself.